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My experience exactly. Although I left many early as they clearly had no clue what they were doing. Have you tried Muldoney's plan for EDS? https://www.amazon.ca/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880
Its highly regarded as a PT resource in the EDS community.
Dr. David Sinclair advocates in his book (no affiliate) for NMN as an NAD booster.
My own experience (31F) is that niacin makes me flush and feel uncomfortable, and that's a common complaint. That said, niacin much, much cheaper than NMN, which is why I think a lot of people cross their fingers that it's a good alternative.
Take note that taking large doses of sustained-release niacin over a long period of time can cause liver damage.
All that said, my non-medical advice is that if niacin is making your quality of life worse, you might want to try an alternative.
Ok first there is a great book available as a textbook for PT specific to Eds from a PT with Eds that you can purchase on amazon. https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880
I am currently a part of two research studies on EDS. One in Boston run by Dr Matt Holick whom I urge everyone with EDS to contact and join even if only remotely to contribute to the genetic research portion to identify all the markers for the hEDS folks and aid crispr. The other portion is aiding in finding better palliative treatments so our suffering is less. The other study is a PT specific study run by Plymouth state college by an amazing PT who has his whole heart into finding ways to help us help ourselves.
Don’t take my word for it for sure. Don’t take anybody’s word for that matter and dig as deep into it as you can and try to really understand what is going on and what you can do to help make its impact not so heavy.
If you just gave up and gave in and said to yourself this is the card I was dealt and just take it, what do you honestly think will happen to your body? Muscles will degrade and you will legitimately hang off of your extra loose ligaments. Do you know how I know this 💯 because this is me right now. I finally have gotten to the point where my body cannot take anymore. I have disks in my back degenerating and I slipped a disk mushing dye into my hair. I’m pissed and finally got to the point of I’m going to be wheelchair bound again but this time in a power chair because my arms are garbage point in life. I can come back from this I’m sure at least enough to stay out of the chair for longer. There was a girl with EDS on American ninja people we can heal but not by freaking sitting there and taking it.
Seriously though if you don’t want to deteriorate and be taken by this disease then fight man or don’t be surprised when it’s you stuck in a chair wondering how in the fuck you got there.
https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880
I have seen definite progress every few months.
There is no end date to physical therapy and Ehlers. We have to do exercises forever to not degrade... I know how hard it can be.
Hey fellow Zebra! I also have hEDS, POTS, and ADHD! Plus hemiplegic migraines and I'm autistic. I'm currently in my final year of my MSW program and I'm doing my internship in a primary care setting. Everyone else has given good advice re: accommodations and communicating with your school/agency/supervisor, but I wanted to chime in for EDS specific stuff. This shouldn't be construed as medical advice; these are just my own opinions based on personal experience.
Are you in physical therapy with someone who knows EDS well? My PT has been critical for keeping my symptoms manageable enough to work. He's a manual PT that helps me get my joints back in place, which is great because I usually have about 4-5 subluxations between my twice-a-week appointments. A good PT must be EDS-literate, though, because standard PT techniques (like stretching) will make us worse. If you don't have an EDS expert near you but find a PT who is willing to learn, Kevin Muldowney, who literally wrote the book on EDS, provides one-time consultations where he can draw up a treatment plan you can bring back to your local therapist (although these aren't covered by insurance and can be pricey). If traveling to Rhode Island isn't feasible for you, his book can be used as a guide for you and your physical therapist.
In general, just keeping an eye on your hEDS symptoms and making sure you're getting screening for all possible complications is something you shouldn't neglect. I didn't find out I had a tethered spinal cord until my late 20s, and after that was fixed, working became way more feasible.
Living Life to the Fullest with Ehlers Danlos Syndrome
The r/ehlersdanlos subreddit is helpful too.
My physical therapist recommended this book to me. It’s a comprehensive guide for ehlers danlos patients and their physical therapists. It outlines an exercise program to reduce pain. If you can find a pt who will work through it with you, it’ll provide the education they’ll need. Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS https://www.amazon.com/dp/1478758880/ref=cm_sw_r_cp_api_glt_fabc_WM15B8NE6EPRZM6KXSVR
If you want a better understanding of the topic, Sean Carroll's book Endless Forms Most Beautiful is a great intro to the topic.
I can relate to so much of this. While you’re waiting for a diagnosis, maybe this might help? I was working with an amazing physical therapist before Covid, and she recommended this book by Kevin Muldowney that’s basically all exercises.
Why Am I Still Depressed by Jim Phelps was the first book I read after being diagnosed and it really helped me come to terms with my diagnosis. It introduced to me the idea of the bipolar spectrum which really resonated with me and allowed me to be open to the idea of trying mood stabilizers and antipsychotics which I have since become stable on. I actually loved the book so much I bought another copy and gave it to my parents who also found it to be educational and I believe it’s helped them come to terms with my diagnosis as well.
This book is a guide written to teach PTs how to treat people with EDS. It’s approved by one of the top EDS experts. It’s basic enough that you should be able to do it yourself. Take the muscle relaxant at night. Yoga involving stretching is bad for EDS. Support is in this group
I ascribe to the Krapelin/Ghaemi/Phelps view that what is crucial in treatment is not whether mood is unipolar or bipolar but whether it is cyclical or not.
https://www.amazon.com/Depressed-Recognizing-Managing-Bipolar-Disorder/dp/0071462376
There is a lot of persistent depression or hard to treat depression that is more like "soft bipolar" or "phenotypically non-penetrant" bipolar.
Basically, if patient doesn't respond to anti-depressants or especially if anti-depressants make them irritable or hypomanic, put patient on Lamictal or Lithium and see if that works.
Stopping the cycling or recurrence is more important than level of current mood. Mood can be elevated once cycle is eliminated.
This isn't DSM-V orthodoxy, which tries to define distinct diagnostic categories, but reflective of the continuous nature of dimensions and latent variants in real world.
It sounds like the doctor was trying to say this with
Based on what I’ve heard from others, these two are the most popular. I have both books, but I haven’t read both from cover to cover. From what I have read, the content is very similar. But, TBH, it’s been at least 5 years since I’ve read them, so take this with a grain of salt. You should look at reviews.
Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS
https://www.amazon.com/dp/1478758880/ref=cm_sw_r_cp_api_i_76NDPCXM7N8P3M930VEP
Joint Hypermobility Handbook- A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome
Doctors who understand are very hard to find. Especially about EDS. If youre in the US, there are EDS specialists scattered throughout the country here, typically orthopedics if im not mistaken. I FINALLY was able to get into one after a year long wait, u jus have to search for them and be patient to get into their office. He was by far the most helpful dr ive ever had. Recommended me to a whole list of other specialists who focus on comorbidities with EDS (dentist, pt, obgyn, cardiologist, ophthalmologist, etc) so they v much understand what’s happening from multiple aspects. It also might be beneficial to call different PT’s in your area and ask if they have anyone who focuses on EDS or know of anyone who focuses on EDS or connective tissue disorders in the area. Im at a point i refuse to see a PT unless they have at least a little experience or are willing to listen to me when i say “if i do anymore im going to start subluxing”. If a pt understands eds, they usually wont push u too hard. If u say stop they say ok lets do a different part of the body. Ill add a link to a book with a protocol for EDS patients that i give to every single PT ive ever had. It goes into what eds is and why it needs to be treated SLOWLY. Theres phases for the physical therapist to take you through, and another section for you to work on at home. Its very informative for an unknowlegable PT.
If a doctor ever told me to just suck it up and live with it and give up on life basically i would probably never go back to them. I almost feel like that’s malpractice. Because there are ways to improve the quality of life w EDS. Its not curable sure but it is treatable. Itll take effort from u but it is possible. Dont give up just yet and look for some dr’s who actually care about ur well being and know what theyre talking about with EDS. :) <3
That’s was hEDS experts say is the problem with standard PT programs for us. I recently started this: Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS https://www.amazon.com/dp/1478758880/ref=cm_sw_r_cp_api_i_ND66CEK96RWMYWHKG02S?_encoding=UTF8&psc=1
It’s verrry slow going but makes sense for my body at least.
https://www.amazon.com/dp/1478758880/ref=cm_sw_r_apan_glt_i_R1EXM1B7RHY4PHZHMVV1 I don't often recommend things from Amazon but I have been using this book has decreased my pain by about 50%. If you can find a PDF copy somewhere on the internet I think it can probably help
some links read the book : https://www.amazon.com/Lifespan-Why-Age_and-Dont-Have/dp/1501191977/ Its a book by Prof David Sinclair at Harvard University.
A copy of Kevin Muldoney’s book to your PT may be a good. Or find a PT trained in pelvic floor and manual therapy. https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880/ref=mp_s_a_1_3?crid=9JW8DEVK6T7P&keywords=kevin+muldowny+physical+therapy+guide&qid=1644385338&sprefix=Kevin+muldo%2Caps%2C157&sr=8-3
> OP is claiming there's no genetic basis for human behaviors.
Probably correct.
> humans don't have instincts
We instinctively listen for our childrens' voices over others on the playground. We instinctively react to the stimulus-response of pain.
>This is from our genetics, our natures.
You need to read more books. Start with this one
Yeah, sounds like EDS or something similar. I got diagnosed going first to an orthopedist then to a rheumatologist, who sent me to a big university for a proper diagnosis.
For now, this book it’s really useful. I spent most of my time reading go, “wait, THAT’S why random thing happens?!” EDS is responsible for so many things you wouldn’t think, from being extra clumsy to having an overactive startle response.
I feel like my ADHD provides me with the potential for flexibility. I'm just scratching the surface trying to wrap my head around all this stuff we have to learn how to manage because of how disrupting it can all be. There are two workbooks I recently picked up that I haven't yet jumped into but were recommended and do look really helpful/useful. If you are interested,
https://www.amazon.com/gp/product/1886941394/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1
https://www.amazon.com/gp/product/1641522720/ref=ppx_yo_dt_b_asin_title_o09_s00?ie=UTF8&psc=1
Μπορείς να διαβάσεις αυτό, θα σου φτιάξει τη διάθεση:
David Sinclair - Lifespan: Why We Age, and Why We Don't Have To
Δεν είναι τίποτα new age self help αρλούμπες, σου λέει με απλά λόγια σε ποιο στάδιο βρίσκεται η επιστήμη της γήρανσης αυτή τη στιγμή, και τι μπορούμε να περιμένουμε τα επόμενα χρόνια/δεκαετίες.
Cheer up, και join us @ /r/longevity!
Lifespan by David Sinclair had some info on this. Haven't read through it yet, can't recall most of what I read in it. amazon linkeru
Try this book, my physiotherapist said i didn't need to keep seeing her if i followed this book and to just book in with her if i had a problem or new injury https://www.amazon.ca/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880/ref=asc_df_1478758880/?tag=googlemobshop-20&linkCode=df0&hvadid=292914682536&hvpos=&hvnetw=g&hvrand=3964317137124261645&hvpone=&hvptwo=&...
Make a list, do 2 things a day.... make a phone call then do 10 min of physio. Set an alarm, have someone call to remind you, whatever you gotta do.
Update on my previous post about high/low intracranial pressure.
I had an MRV to image the vascular system within my brain. This revealed an abnormality in a vein in the back of my head that my neurologist says would be either from an existing blood clot or a prior clot. She ordered more imaging, with contrast, to get a definitive look. In the meantime she advised aspirin just in case, but I've been taking baby aspirin ever since I read Lifespan by David Sinclair.
This is especially frustrating because the MRV was originally ordered with contrast. The radiology tech that day, operating the neurology practice's own MRI in a location separate from my neurologist, thought this must be a mistake, because in 20 years she's always performed MRVs without contrast, that the blood flow alone is enough to perform an MRV. She said she'd start without contrast and follow up with the doctor, and she reported to me that she did and confirmed no contrast was needed, but I think this was a lie. At the neurologist's office when were talking with the front office staff they were reporting that their in-house techs "can't" do an MRV with contrast. My guess is that the phone call from the tech to the neurologist's office was just this: the tech reported to the receptionist that she either can't or won't do an MRV with contrast, and the receptionist said okay and passed it along.
They ended up being able to schedule me with a different technician. I had an MRV with contrast this past Monday, we'll be reviewing results on Friday.
May be cheaper elsewhere, but this is the book I believe
Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS https://smile.amazon.co.uk/dp/1478758880/ref=cm_sw_r_apan_glt_fabc_M4M2VPN8WRD3ENGT3QRD
https://www.amazon.com/Lifespan-Why-Age_and-Dont-Have/dp/1501191977
Sorry it's Lifespan not Longevity.
Have you seen info on using some of the chemotherapy drugs to eliminate senescent cells? That's another direction toward longevity I've run across.
Oh, and how much niacin do you take?
I haven't read it, but I understand that this book describes a protocol for PT for EDS, and it's supposed to be pretty good. It's apparently written by a PT.
https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880
>NMN causes liver problems and cancer.
Source? All studies I've seen show it safe for human consumption up to 500mg per day, higher doses not tested.
>You will never be able to ear anything that will make you live significantly longer. It's against human/mamal biology
You know there are mammals that live significantly longer than humans, right? Whales live to 200+. It's not "against" biology, whatever that means. Biology is an ever changing study of life, not a set of rules that life has to abide by.
>Good thing you're looking into it though hopefully you can find better sources.
I tend to trust the doctors who spend their life researching it, I suggest you take a read: https://www.amazon.com/Lifespan-Why-Age_and-Dont-Have/dp/1501191977
Extra salt has helped my pots noticeably. Everyones dosage is different, youll have to find one that works. And make sure under doctor supervision. Im less dizzy when going from sitting to standing when Im eating salt/drinking sports drink. I get powdered gatorade and add just a smidgen to seltzer, juice, or regular water throughout the day. Ill have a full strength "chug" of 4-6oz if I feel dizzy.
If you can't walk every day, find something you can do, that you enjoy, that you can do 20-30 min a day for exercise, at the very least. Make sure the muscles around your most vulnerable tendons and joints are strong. And safely strong. We dont do well with power lifting, nor basic resistance exercise! . Its key to find ways to stay strong and active, safely. the Muldowney Protocol has helped many find long term pain relief, and a more active lifestyle with EDS.
https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880